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Thursday, September 28, 2017

Here it is autumn already. The
season is catching up with the dead looking leaves on the trees attacked by the
Japanese beetles. Hopefully, we’ll get some nice fall colors out of the
remaining leaves.

The yard is starting to look like
autumn. We are surrounded by cornfields that have turned golden brown as they
quickly approach harvest time.

Yesterday was the first day it was
cool enough to think of dragging out the autumn wardrobe. At least it was a day
I didn’t feel like I had to wear a sleeveless blouse to keep from melting. We
even had a gentle autumn rain.

I wore a hoodie this morning when I
walked the dog. With her long hair, she seemed to be enjoying the autumn crispness
too.

I kept telling myself that I need
to get in gear and drag out my fall decorations. Last year, it was nearly Halloween
before that happened. Unfortunately, decorating often falls into the “I can do
that tomorrow” category. It seems each day I have a list of things that have to
be done that day and can’t wait until the next. Or worse yet, the things that
should have been done last week…or the week before that.

Catching up happens every year
after Walk to End Alzheimer’s. I have a lot of catching up to do. I tend to let
everything else slide in the last few weeks before Walk, and often in the two
weeks following. That means the last week in September and the first week or so
in October are times to put on a different hat and catch up on everything I put
on hold during the walk.

Every year I look at my September
calendar and think…it won’t get busier than this. Then, I flip the page to
October and have to take deep breaths before I admit that I’m not going to be
caught up until at least November.

I have several days on my October
calendar double-booked and two days triple-booked. I have some serious choices
to make. Throw into that the unknown, unexpected things that happen and October
just got really, really scary.

I can’t help but wonder what I
would do if I ever did actually catch up. I kind of think that’s never going to
happen. Makes me think of what my sister-in-law used to say, “The hurriered I
go, the behinder I get.” That just about sums it up.

Thursday, September 21, 2017

We didn’t get any decent tomatoes all summer long. Harold
left for town this morning and gave me a call. “We have three or four semi-ripe
tomatoes.”

“Okay, I’ll go out and pick them,” I said. I walked out to
the potted tomato plants expecting to pick a few and bring them inside. Ripe
tomatoes were everywhere. The saying, “Good things come to those who wait”
popped into my head.

You wouldn’t think that I’d even think of this expression
since patience is not one of my virtues. Sure, I have a lot of good qualities:
empathy, a good work ethic, general optimism, and so forth. Patience does not
make that list. Nope, not even as an afterthought.

My lack of patience gets me into trouble sometimes. I get
really frustrated when I’m trying to open a file on the internet. I absolutely
hate waiting for that little circle to stop spinning. Or for an ad to pop up
and obstruct my view. Life is too short to wait, and wait, and wait. Often, I’ll
just close it and figure that I didn’t really need to know the latest “shock
and awe” news story.

Patience. I know men don’t usually have any patience, but
everyone expects a woman to have it. I used to have a certain amount of patience,
but I guess years of budgeting my time has zapped what was left of it.

My saving grace is stubbornness, or bull-headedness if you
ask certain people. When I don’t have the patience to complete a task, I’m
stubborn enough to see it through.

I’m starting to lose patience with a cure for Alzheimer’s.
People die every day from Alzheimer’s and related dementias. We can’t find a
cure soon enough to suit me. I can’t wait for the first survivor.

We thought about that first survivor at the Walk to End
Alzheimer’s this year. During the opening ceremony, we hold high pinwheel flowers
in various colors to represent the walker’s connection to the disease.

I always choose a purple flower because I’ve lost someone to
the disease. Yellow is the color for caregivers, blue for those who have the
disease, and orange for those who are supporters. This year, a new flower was
introduced. Two young children held up the white flower that represented our
hope for the future. The white flower is for the first survivor. That person
does not exist at this time.

After the ceremony, they gave me one of the white flowers. I
hope before much more time passes, I can take the white pinwheel back to the
walk and personally hand it to the first survivor in our town. I hope to see
our walk filled with white pinwheel flowers.

No, I will not patiently wait for the first survivor. I’m
going to be walking, advocating for more research funds, and doing all I
possibly can to push, cajole, and become the squeaky wheel.

Patience is not one of my virtues. I might as well make the
most of my shortcoming.

Monday, September 11, 2017

In 1998 the year of my first walk, four
troublesome years had passed from the time I had noticed Jim was having trouble
remembering basic information. Jim had always had an amazing recall for numbers
and dates, but had forgotten his social security number. I thought that
strange, but I didn’t push the panic button until he admitted he didn’t know
his birth date either.

After testing, it was determined
that Jim had dementia of the Alzheimer’s type. Jim, of course, insisted he didn’t
have “that,” as he referred to it, but when we saw an article about an upcoming
“Memory Walk” in Sedalia, he wanted to go. “I have memory problems,” he said. I
had already signed up for the walk and had raised some money, but since Jim
didn’t have “that” I thought he wouldn’t want to go.

We arrived at the first walk to
discover we were the only people from Sedalia. The other walkers were Helen and
Chuck from Slater, Joetta and Penny from the Alzheimer’s chapter office in
Columbia, and Penny’s dog, Victoria. Six people and a dog, and I knew all their
names—including the dog.

Saturday, was a different story. More
than three-hundred walkers and thirty-six teams crowded into the highway
gardens. We had professional DJ’s, a super sound system, corporate sponsor
booths, volunteer shirts, a professional photographer, and pinwheel flowers. We
even had an official playlist of songs. At the first walk, the closest thing we
had to music was Helen’s hunting horn. The highlight of the walk was going into
the VFW where a veteran asked Helen to blow her horn. After she blew her horn,
they took up a collection to add to the walk total. The grand total was $600,
almost all of which I had collected from co-workers and friends.

To make my twentieth walk special, I wore my 1998 shirt and my team wore the 1999 - 2017 shirts. We knew they weren’t
exactly vintage shirts, but my niece and I laughed about struggling not to call
them vintage. Old, I guess was the correct terminology.

Yesterday, Facebook posted a “memory”
from twelve years ago, September 10, 2005. My son, daughter-in-law and their
two kids were at the Memory Walk wearing 2005 shirts. I smiled at how small the
grandkids were, and then I realized that was how small they were when Jim died
earlier that same year. It made me incredibly sad to realize that they lost
their grandpa at such a young age, and Jim missed out on seeing his grandkids
grow up. Family was everything to Jim. He loved being a dad and was over the
moon about being a grandpa.

It’s hard to believe that I’ve been
doing what I’ve been doing for twenty years. I logged my shirts before I took
them to the walk to make sure that all the years were covered. Some of the
shirts did not have a year and I had to look at photos to determine which years
went with which shirts. Then, I identified the shirt by what it said: Move; We’re
on the Move; WALK (in Alzheimer’s Logo).

After the walk changed from the
Memory Walk to the Walk to End Alzheimer’s, the message on the shirt conveyed increasingly
positive meanings. The 2017 shirt, Together We Can End Alzheimer’s, told its
own story. When we work together, we can change impossible to possible.

It is shocking to realize that my
kids are older than I was when Jim developed those first troubling symptoms. Time
passes so quickly. Lifetimes come and go. There have been times in my life when
I felt I was walking alone, but more often, I’ve relied on and been supported
by others. Together, we can accomplish anything. Together, we can accomplish
everything. Together, we can end Alzheimer’s.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.